I am so disgusted I can't even explain so I will just say that I won't be able to be a part of the Drug Trial.  Instead I am off to see an Infectious Disease Doctor for treatment of yet another health diagnosis.  When does it end, it just seems like one thing after another. I am wondering if this too was caused by the Humira. 

I'm really quite miserable.  I think my lack of running to the ER and or Urgent Care isn't beneficial to my cause.  I suppose if I didn't try to always suffer through it, I would probably get more help in the end.  I can't even get help today with my pain, my husband asked if I needed to go to the hospital and I always refuse and get through it.  Truthfully, I have spent so much money on this disease and every visit costs an arm and a leg in tests. I'm getting to the point that I just cannot keep dealing with all this pain.  When is enough, enough.  Two natural child births make me realize I'm no wimp either but really, it's getting very old.  I wished I had something pleasant to say, I just don't.  It just isn't any fun!

I am so surprised by the people that have the most compassion. The ones that seem to have their own set of problems are the ones that are the most understanding.  The ones with easy little lives seem to not care about others as much as you would expect.  People who spend their lives trying to make big impacts do so only for recognition.  People who care about the little people are the ones to be recognized.  You can try and impact big situations but to help someone hurting directly is a bigger act of kindness.  You can donate to a non profit and make yourself feel better, but to call someone who is sick or in need of help is truly giving.  The big picture may make yourself feel better but the smaller picture makes the hurting feel better.  Are you impacting the big picture or the small picture? 

It is almost midnight and here I sit trying to work.  My lupus burned spots turned into dry shriveled skin that eventually blistered and is now a hot mess.  It's in the most uncomfortable spots, my whole underarms, close to my breasts, very sensitive spots.  My Crohn's of course started in as soon as I woke and all day long continued to fight me.  I am having a hard time falling asleep with the pain lately.   Long, long days.  My body is worn out and my pain won't let me sleep.  It is obvious each day I am getting much worse instead of better.  When I do finally see some relief, I'm going to be very appreciative.

Super bad night yesterday.  Ended up on the bathroom floor unable to get up to the toilet or to bed.  Luckily my wonderful husband found me and put me to bed with pain pills and a heating pad.  Back and forth to the restroom and unbearable pain.  But somehow, like always I made it through it.  Today I feel exhaustion.  A very long week, the testing for this Drug Trial I have to say was just too much for me to go through.  I am still strained about my participation.  It's possible it will cause more harm than good or it may be a miracle for a while anyway.  Hard to say.  After last night, I'm almost willing to do long term Prednisone.  I am not a weakling by any means and will trudge on. 

The point of my blogging isn't to expect anyone to feel sorry for me or make you yourself feel bad.  I am blogging and being frankly honest.  Many people who are crohnically ill aren't this honest about how horrible it really is or how horrible they really feel.  If you ask most people how they feel they will put a smile on their face and say fine.  I am not going to pretend that my life is easy by any means.  My life has been put on hold because of my illness and my families too.  If you read my blog, the very least you should take from it is that you yourself, if you are feeling well, should grab life by the horns.  Go and do as much as possible, smile and be happy.  Because if you don't, there may come a time where you will really have a reason to feel unhappy and you will be sorry that you wasted one precious healthy day doing anything but just that, being happy!  If anything you should be forever grateful that you don't have to deal with the same problems.  And maybe, just maybe if you meet someone who is dealing with something, they may look okay on the outside but you will have a better understanding that things may not be as easy as they seem. Having compassion for others should make you feel better.

My lupus and crohns are both acting up today.  I look like I have been severally burned and cannot put a bra on.  It is miserable.  So, I am in pajamas today and won't leave the house.  I am going to have delve into Lupus and  figure out what I am going to need to treat it.  The first round of options I cannot take are aspirin therapies.  Second round is Prednisone and I refuse to take that.  The third would be the drugs to take to lower your immune system and I have taken many without help.  One being the Methotrexate that is being talked about as the Pediatric Cancer drug that is unavailable.  It was unavailable when I was taking a few years back. It was super cheap but very hard to find.  The expensive drugs are never hard to find. Hmmm.  I do have some topicals but they do change your skin consistency.  So I will do more research. 

Spent all day yesterday at the Clinic.  Basically did every test that I had done before when I tried to join the Trial.  I am having misgivings.  Not sure exactly why.  But after a full day of everything I need to take back a bowel sample and then will find out if I can join this first phase Trial.  If so, then I would have an appointment set for an infusion or injection of the drug or a placebo.  I won't know which.  Then at week 3, 6 and 8 I would have more tests to go and have done and then if I get relief from either the Placebo or Drug I can then go through the whole process again to see if I qualify for the Maintenance Trial.  At which time I would receive the placebo or drug depending on what was originally given me.   I have misgivings.  This is a lot to go through to may or may not feel better.  Yesterday was over the top too much for me.  I came home and went to bed and got up at 10 a.m.  Today I have been a pill popping maniac just to get through the pain. I had to go do something for work and could barely stand up.  The doctor that saw me was kind and gentle and felt bad that I was so miserable.  She also noticed my Lupus was flaring awful, I had that wonderful butterfly rash across my face and broken out in many other areas.  If I had the money I would just go buy Cimzia to try and get some instant relief.  But since I don't and can't I will continue on this route for the hope of some possible free medication.   I really felt like a guinea pig, being poked and prodded and your Trial Nurse doesn't really want to connect with you, just go through the motions.  Even though he really was kind and efficient.  I hate to complain as I am lucky to have this close by to go and try but I still have misgivings.  I suppose if I didn't something would be wrong. 

Hard day yesterday, basically had to stay drugged in order to function.  Sleep was horrible and to get out of bed this morning I had to hold my lower right abdominal area to walk.  I am so ready for some help with this disease.  I am not functioning well at all.  The boys are off this morning to look at motorcycles and normally I would go along, I really don't even care today.  I will be lucky to get some work done.  Might even go to bed.  This is no way to live and I refuse to give in. I will live today again functioning with pain pills and work as hard as I can and hope that tomorrow is a better day.  If I won the lottery I would go have a hysterectomy tomorrow as I know the growths are pushing on my colon and I would pay for Cimzia to treat my Crohns.  But I feel lucky to be able to go into the Drug Trial as it may help and it's free!

So after talking to my GI Dr Bochner, he is winning points with me.  Just taking the time to call me without having to ask means a lot.  Also, have a great Trials Drug Nurse Aaron Pratt.  We have decided to go ahead and go on the Trial.  So back I go Monday to rerun everything, tests paperwork.  I will need to take back another stool sample on Wednesday and then with fingers crossed an infusion the following week.  The first Infusion may be a placebo or Stelara, I won't know.  Then after about four to six weeks I will join another Trial for a regular infusion of the Drug.  This has been a long haul. It was last February that I had to stop Humira due to a reaction of Lupus.  Since then, I have been on a soft food diet and just meandering through each day, taking pain pills as needed but sparingly and being miserable along the way.  Just need a break from this if at all possible.   I saw my GP yesterday and he thought my liver tests weren't all that bad.  My ALT was 59 which is still high but low and my AST was 29 which is fine. So with that news in hand I will move forward with hope of better days ahead.

Had my liver labs done again yesterday, same as last time, still high.  My GI actually called me, I am so impressed.  He suggested Prednisone.  I just can't do it, I feel like I'm trading one set of bad symptoms for another.  He wants me to take for two weeks, said it might help my liver?  Never heard of that.   Wants the tests done again in two weeks.  Suggested again a liver biopsy, I am just not down to go through that.  I go to the doctor today to discuss my Cymbalta.  Hard night, slept with a heating pad, if you call it sleep.  Awake on and off all night and tossing and turning trying to get comfy.  I'm not sure what I am going to do.  Still taking all my supplements. 

Yesterday I decided to start taking supplements.  I figure as bad as I feel, it couldn't get worse.  This is really at my husbands insistence, it's hard for him to watch me suffer.  Back on my Kyo-Dophilus, a non dairy probiotic.  I think everyone with bowel disease should take some form of this.  Fish Oil with Omega 3, Liver Health Complex with Milk thistle and 5 Loxin.  I feel better this morning, I haven't taken a pain pill yet, now this could just be coincidental but since it doesn't hurt me to take these supplements and my liver is too sick to take conventional medication I will continue this route and see if I get significant results.  At this point, I am willing to try almost anything. 

So I can really tell that my liver isn't well.  I have been ignoring this fact and hoping it magically goes away.  My bowel color, upper right pain, especially if I lie on that side and nausea if I take any medication.  But with Crohn's you have so many symptoms that dealing with more just seems like a terrible sick prank.  You try to ignore the things that are not causing you excruciating pain, because the pain symptoms overtake everything else, I can see where things can go undiagnosed with us.  What I am really trying to say is that Crohn's is so all encompassing that the other stuff seems insignificant sometimes.  I sat outside this morning and enjoyed some morning sun as I know that helps some.  I had terrible liver sickness when I was on Imuran, you feel like you have the flu and general malice.  But you feel like that with Crohns too. 

So the Trial Nurse called and said my last Liver lab was too sick to start the Stellar Drug Trial.  Even though Dr Bochner's nurse Jessica told me it was fine.  I cannot trust this person with any of my medical dealings.  Had I known back in October that it wasn't fine I would have stopped another drug I am taking.  So I am now weaning myself off and will go in and have my tests redone this week.  All we are looking for from these so called professionals is the truth, some just don't want to take the time to look and give that to you.  Dr. Bochner thank goodness is going to run my labs again and I will just take it a day at a time.  It would be nice to be able to take something to help with my disease but I will accept the fact that my liver is too sick.  I know he still wants to do a biopsy and I absolutely want nothing to do with it.  I will try and get more sun each day and hope and pray it gets better, even though I know the liver can regenerate itself, there does become a point where it can get too sick to do that.  But until I am sure I will just keep moving and working and dealing with not feeling well. 

After reading a comment someone left I find it very interesting that people think you should be able to take medication and get better, right?   Well, not so easy with this disease.  There is no cure and basically the best thing that can happen is that you manage your symptoms and miraculously go into remission.  Not so for myself, i have never experienced remission since being diagnosed.  I have tried all the hard core medications to treat this disease too.  I'm sure people get tired of hearing about it, I really can't blame them, I get tired of dealing with it. 

My hero is my 20 year old son who faces seizures on a daily basis since the summer before his Senior Year of High School.  He doesn't let it get him down, he forges on and does everything that he wants to.  He is an avid motorcycle rider and racer.  He is the first to say mama do you need a pain pill, you don't look well or is there anything I can do to help you.  He takes medication that really does help keep his ticks at bay but on the flip side makes him feel pretty crummy.  You couldn't tell that by looking at him, you would never know there was anything wrong with him.  He lost his Senior year of varsity Tennis because the school refused to make an exception for him not being able to take full classes soon after his diagnosis.  He loves to work, goes to school and my inspiration, anytime I start feeling sorry for myself, I remind myself of the plight he has taken on at such a young age and forge forward.  I never asked for Crohns Disease and he never asked for Siezures.  If he can do it, I surely can too.

So I am desperate for help and emailed my GI doctor and he actually got back to me very quickly.  I am impressed and thankful.   He is going to see about getting me back into the Stelara Trial.  At this point I can tell that I desperately need something other than just not eating and relying on pain pills to get me through this Disease.  So, I will take any help I can get.   Even though I have a sour taste from the care I have gotten in the past at the clinic, the Trial Nurse is a wonderful individual and very caring and I know she would do anything she could to help me.  So I feel there is some hope and will grab at anything that might help me.

This disease sucks!  It's keeping me from going places and doing the things I would like to do.  I am in a constant state of pain and the reality of it really bites!  Today I cannot sugar coat this disease one tiny miniscule bit.  The pain in my gut is constant and will not budge!  I emailed my doctor to see if I can get back into the Stelara Trial instead of waiting to see if I can get assistance for the Drug Cimzia.  I need help and the sooner the better.  This is an inhumane way to have to live. If I had decent insurance I would go to the ER, although all they could do is drug me up even more and I am getting real sick of pain pills.

Super hard night of pain and nothing would help.  Pain pills, heating pad, nothing.  Just sat up all night and all day today seething in pain.  Seriously, this is a tough way to live.  Pain is draining.  It literally zaps your brain cells and your energy.  You can't help but focus on how bad you feel because of the inability to concentrate to do other things.  Luckily, my family is helpful.  My Family Doctor called and I have an order to have my liver functions tested and need to go in and see him to get a referral for my possible hernia.  Unfortunately, there is an outbreak of Meningitis in our little City and they are wanting everyone to get vaccinated.  Because I am worried about being exposed to this, I am putting off going in and getting this done till this all settles down.  I will go into the small hospital area on Saturday when no one is there and get my blood work done.  I am not even sure with my immune system suppressed if I can get vaccinated and am not even sure I want to.   I quit getting the flu vaccine after getting terrible sick every year I received one.  On top of all of this I am fighting off my sons cold/flu that turned into Bacterial and after three weeks he went in and got an antibiotic to finally clear it up.   I will not be able to get an antibiotic to get rid of this, so I need to fight it off.